B12 is just a vitamin...

[Clare184]

This is what the nurse said to me today when I was a bit upset at being told I couldn't have my jab because apparently the dr hasn't put an explicit note saying 8 weekly jabs (even though I've had them 8 weekly since last May) After some arguing and quoting of bnf etc I did eventually get the jab over an hour and half later but it has gone back to my dr to clarify the frequency for future jabs.

Anyway just thought I'd post the comment here for all of us so used to the complete ignorance around b12 to collectively shake our heads at!

[wedgewood]

I really feel for you .Why are GPs so ignorant about B12 deficiency and PA ? I gave up arguing and pleading for injections .I had a diagnosis of PA , for which I had to go to a private GP . My numb feet were “idiopathic”But I could only have an injection every 3 months . I gave up the fight and turned to self-injecting. I can recommend it . It is cheap and so convenient . It gave me back my life . I hope that your doctor will make sure that you get the injections that you need . Good luck 🍀

[Sofiihorrell in reply to wedgewood]

Hi I’m 19 and was diagnosed with B12 deficiency last October with a level of 92!! How do you go about self injecting? I’m desperate to get my injections regularly I’m like a zombie. I can’t function properly at the moment!

[wedgewood in reply to Sofiihorrell]

You can get B12 Hydroxocobalamin ampoules from German online pharmacies . Hydroxocobalamin is what the NHS uses . It is a over the counter medicine in Germany but is only obtainable with a prescription here in U.K. .If you are serious about self injecting because your GP will not let you have what you need , I will let you know how to go about it . I have a lot to do at the moment and haven’t the time to write it all down now .But it’s not too expensive if you buy in bulk —-only about £1.00 a shot including needles , syringes swabs and ampoules ( 100 of everything )

[Sofiihorrell]

How often do you inject? And how much would you say it costs you per month to self inject? I’m seriously considering it because I’m only 19 and really suffering

[Polaris in reply to Sofiihorrell]

I'm so sorry you're suffering. Some suggestions here Sofiihorrell:

healthunlocked.com/pasoc/po....

I buy 100 x 1 ml Hydroxocobalamin from Germany - delivery approx £8 :

versandapo.de/8608/3862305/...

and inject as per British National Formula guidelines for neurological symptoms, "every other day until no further improvement".

Good luck

[Trulyradical]

When I went to collect my B12 results last year, I was on my knees! The receptionist looked at the results and said, the doc wants to see you but it’s nothing serious . I couldn’t get an appt for 4 weeks! At the time, i couldn’t even get dressed in one go without a rest in between and had all the other accompanying symptoms. They were never gonna make sure I was well. I now self inject (thanks to the lovely advice on this forum! )😊

[pitney]

Unfortunately a lot of us have been down that road Clare184 I do hope you get the treatment you need , I gave up trying to get my injections every month almost a year ago and now self inject and although I still get symptoms and some bad days i am much improved on the way I was. Good luck and All best Wishes

[Polaris]

I hope you're able to get more frequent injections in future without this hassle Clare. It is almost unbelievable that, even though vitamin B 12 is a primordial molecule we cannot live without and having pernicious anaemia means you cannot absorb it, the medical profession still have this attitude.

No wonder so many of have no option but to resort to self Injecting to get sufficient to avoid being permanently damaged......

[helvella]

Beriberi, Pellagra, Neural tube defects, Scurvy, Rickets, Bleeding diathesis are just diseases/disorders caused by lack of various vitamins.

Perhaps the nurse would care to go on a vitamin-free diet?

[taka Administrator]

Grrrr!!! It is "just a vitamin" but it is a critical one to life!

It annoys me hugely that I can buy B12 tablets or sublinguals at 1mg (or higher!) from various places easily but yet my access to the exactly the same dose in injection form is so massively restricted in the UK. It feels like I am being penalised because I have PA and consequently can't absorb anything more than a tiny fraction of the dose orally and need it via injection to get the full benefit of the dose. *sigh*

I've just been to get my (NHS) B12 injection this morning. The nurse also printed off and signed a repeat prescription so I could pick up more hydroxocobalamin (only got 1 injections worth left at the GPs). The prescription still says 1 injection every 3 months despite my having had injections every 2 months since July 2016 as agreed by my GP! It isn't just you Clare184 . It does get queried sometimes by the nurses so they have to look back through my notes, see its 2 monthly and then agree to do it. I really wish they'd update it...

[Clare184]

I know it's so frustrating, when they finally got a different nurse to give me the jab she started going on about why I felt I needed it more than everyone else when all the people coming to her are fine on 12 weekly! Honestly never bitten my tongue so much but did politely point out that many other countries inject 4 weekly and our bodies are all different hence why different dosages are needed for a variety of medicine and a lot of people have to si much more frequently.

Honestly think I would have gone mad by now if it wasn't for this forum

[thenotsocrazycatlady]

Hi

I may be wrong (I often am ) but I thought b12 was a hormone and has wrongly been named a vitamin. Anyone know if this is correct?